Disability Diaries : The Spine

Back in some part of 2014, my son - J1 - who suffers with quadriplegic cerebral palsy, was referred to a spine specialist with suspected scoliosis.  This completely threw me through a loop and I seriously went into melt down.  After the first appointment, when we were given a very thorough and clear talk about why he had been referred and what they were looking for, what could potentially happen and the probable timescale of this, I did what any self-respecting special needs mother does.  Went home, had a little cry about the unfairness of it all and then pulled myself together by processing the information.

A special needs mother doesn't get long to linger and wallow in self pity - there is too much to do.

For the last two years we have been back and forth for check up's with the spine surgeon and true to what was predicted in the first appointment, they have been just that, monitoring appointments.  He has X-Rays taken (never easy when a child can not sit up unaided), the specialist looks at them on the computer screen, feels down his back, spine and ribs, looks at him sitting in the chair from all angles, then addresses us, the parents.

"It's definitely getting worse.  Would you agree?"  Begrudgingly, we do.  At this point he usually says it's still not imminent for surgery and he will see us in six months time.  We leave the building and breath a huge sigh of relief, while the only thing J1 is concerned with is whether he can have a sneaky McDonalds for lunch.  But we do understand it is only a short term reprieve.  Just another chance to come up to the surface of the water and grab another mouthful of air.

Only, last time the Specialist diverted from script.  This time he 'hmm'd' more than normal, looked at the X-Rays more frequently and for longer.  Checked J1's age - twice.  As he ran his hand up and down the spine for a third time, he said "I think it's time for J1 to go on the surgery list.  Don't you?" 

It was like the air had been sucked out of the room and I what I wanted to say very petulantly was "No, actually, I don't think it's time, you are not going anywhere near my son's beautiful spine.' and knock his hand away. 

But I didn't, because I am a grown up and after two years of processing the information I have finally and rather ungraciously accepted the fact that my son is going to need spine surgery. 

Nevertheless, the specialist ploughed on warning us there is a fairly long wait list (about a year) and lots of appointments and check up's to go through at the hospital before it would happen.  Plus he would be seeing us again for another check up in six months time.

Six months time is now here.  The appointment is in two weeks.  Sleep is harder to come by all of a sudden, it feels like our grace period is coming to an end.  J1 is completely oblivious to the enormity of it and I am torn if the best thing to do would be try and tell him about it, to explain or not.  Sometimes I wonder if he could comprehend it and other times I think, not a chance.  He is such a worrier.  He can fret about something as small as a change in school bus pick up time for a month before it happens.  Would I be crueller by putting this into his mind, or keeping him in the dark?  How can I expect a 13 year old with delayed learning to process it when I am still not sure I am ready to face it?  You see, nothing prepares you for this shit. 

As a parent of a child with special needs you have to be accommodating in who you put your trust in.  Most of the things your child will go through within their life you start off having no idea is going to happen.  When you get a diagnosis, you think you are in the know, but you aren't.  They don't warn you about the weird and wonderful consequences of what not being able to walk creates - deformed hips, collapsed ankles.  They don't tell you that because your child has no trunk control his body weight will pull the spine out of shape and crush his pelvis. 

I guess they don't because it would just be too overwhelming.  Who could cope with finding out all of that?  They let one thing come at a time so you can digest it, process it and accept it.  They give you that chance to get to the surface for air. 

I guess at times like these, with the spine surgery, there is just one thing to do.  Prepare ourselves for it.  We are going to have to take a bloody great oxygen tank down with us and make it last.  Be strong, get through it, be the voice shouting in the corner for our child - because as a parent of a child with severe physical disabilities and special needs it's what we have to do.  There is no other option.

But sometimes, you do need that good cry first. 

   

Eleven

As I took down the last of the Halloween decor, indulged in purely for the delight of J2 and his friends, I mentally ticked that event off of the 'to-do' list.  Next my mind moved to the next big event for our house - hold.  A birthday.  The day it falls is, 6 November, but for me, it starts on the evening of 2 November 2003.

 

Eleven years ago, strangely enough on a Sunday night as it fell this year, my waters unexpectedly broke.  One minute I was watching Dogma and the next I was on the phone to the hospital asking what I should do in the event my water leakage should occur eight weeks early.

 

The response was to not go to them, but to go to the bigger hospital in the next town.  As it turns out they couldn't deal with me either and we got whisked off to a hospital over an hour away.  After monitoring, steroid injections and vast amounts of prodding and poking, I was admitted.

 

My first baby.  Ignorance was bliss.  I learned that quickly; the first steroid injection in the thigh you let them do, the second one you are more reluctant about.  When they go to give you a third you run screaming telling them you really have had the second one already!  Maybe I should have had more sense and kept a record of everything from that point.  But there are a lot of 'What If's' I could spend a whole lifetime debating so I have learned to just accept; I didn't.

 

Any reader of this blog will know the resulting consequences of my birth story.  My eldest son has quadripelgic Cerebral Palsy.  The brain damage he suffered, according the the MRI, happened in the last hour of the birth.  Apparently it is no ones fault.

 

Bad Luck.

 

That is the professional opinion.

 

So, for eleven years we have watched my boy live with this condition.  We have learned to support him and care for him to the very best of our ability.  We have watched him suffer as he recovered from operations needed as a consequence of not being able to walk.  We have watched him grow frustrated as he discovers he can not do a lot of things that his siblings can.  We have, I particularly, felt inadequate as a parent as I fail to get councils / governing bodies / professionals to listen.

 

It is easy to feel overwhelming negative. 

 

Until I have a conversation with him.  Yes, have a conversation with him.  I can hold a conversation with my little boy.  That was something I didn't know I would ever be able to do.  He didn't speak until he was five.  Now he talks, and shouts and sings, beautifully out of tune (a trait he most certainly gets from his mother!)

 

He tells me it is his birthday on Thursday.  He is going to be eleven.  He would like an Ipad.  He thinks he is going to get one.  He has got a flake cake to take into class.  He then tells me the name of his class; who his teacher is and who his best friend at school is.

 

I marvel. 

 

He is a miracle.  Saved in an age of technology.  Afflicted by bad luck but sticking his two fingers up to it's consequences. 

 

He has a lot of issues to contend with, in truth we all do.  Disability makes life extra hard work for everyone involved but he does it with a smile - well for the most part - we are gradually seeing more 'teenager' starting to creep in (but how great is that!).

 

So another year has crept by, I write this blog as I write one every year celebrating his growth and tenacity.  Celebrating the fact he is here, with us, to smile, laugh and give us attitude.  I thank my body for holding him in until just eight weeks before he was due to be born.  I thank the nurse who stuck a steroid injection in my thigh and backside.  I thank my son for being a stubborn and determined little man every single day.

 

Eleven whole years of being the luckiest mum ever.

 

Birthday Time.

The Disability Diaries : The Tsunami of Emotion

Yesterday was one of those days I hate.  A day where fear catches up with me and washes over my mind like a powerful tsunami. 

There is no out running it.

There is no swimming away from it.

There is no rescue helicopter coming for me.

It was one of those days I have to submit to, in the hope that if I let it ravage me, then like a dog with a rag doll, when it is bored it will toss me aside and if I am lucky I have the strength to pick myself and crawl to safety. 

The safety of another day.

I thought it would help if I wrote down all the things that scare me.  All the things that must be seeping out of me, like blood, to attract the shark.  To try and dispel of them.  Or just to get them back into Pandora's Box so I can get along perfectly well for, well, however long the lock will hold.

What was it that set me off?  What rumble at my core set the trigger for that tidal wave?

It was something as simple as changing J1's socks.  I noticed that his right ankle looked quite misshapen.  I looked again, and yes, the ankle bone is sitting next to a lump.  And the foot was very hard, almost solid.  I remembered sitting rubbing an ankle and foot like that before.  My nan's.  When she got very poorly and could no longer get mobile.  Whether it be water retention or whatever, I am not sure, I rubbed and rubbed and that is when I got caught.

The thought of operations entered my head.  Will he need operations on his ankles and feet, for the same reasons as he has had to have the horrendous operations on his hip - if they are not used and do not weight-bear they start to grow out of form?  The words 'operation' and 'surgery' start to scream in my ears. 

Moving on, my mind moves up his legs and hips, already resembling a patchwork quilt of crass needle and thread marks.  I wonder if that wince when I was changing his pad earlier in the day is frequent enough to worry that, yes, he has had rapid growth spurts and, yes, he will need the same surgery again? 

Operation.  Surgery. 

His spine, I try to gage as he attempts to sit holding his head, only partially winning, is it curving more now than four months ago?

Operation. Surgery.  Spine.

I am struggling to breathe mentally, as the fear starts to take over and win.  Mind in overdrive.  School keep asking me about his history with epilepsy.  It hasn't been something I have had to think about much of late, we were lucky and the epileptic activity that J1 once demonstrated seemed to vanish, but they are not so sure that he hasn't been having some absences at school. 

When they told me I was calm, I believe they are over-reacting, but now, I study him every pause, every quiet moment, is it an absence?  One of the things I have counted as a blessing, that he does not suffer with epilepsy, is it coming for us? 

Operation.  Surgery.  Spine.  Epilepsy. 

Now I am struggling to breathe physically.  I need some oxygen.

I went snorkelling once but I spent most of the session attempting to put my head in the water and panicking, coming up and thrashing for air.  Stay calm, the leader signalled.  Take it slow, just breath in and out through your mouth.  It took all my control and discipline and the mantra 'Just breath through your mouth.  Just breath through your mouth.' to be able to concentrate enough on doing so.

Just breath through your mouth.  That is what I am silently repeating to myself now.  Then a little voice breaks into my thoughts.  The voice of J1.

'What time is The Chase on?' he asks.  A life-raft breaking through the rough white foam of the wave.  My link to reality.  What is the reality?  Yes, all those questions are there, waiting to be answered.  But day to day life goes on and he needs me there, not floating desolate in a deep vast sea that I can not control. 

So, I do what I do best, and care for J1 so that we don't have to answer those questions yet.  We do everything we can to keep them as far away from him as possible.  He must never see that tidal wave of fear.  I am his sphere in which he sits, oblivious, dry and content, like a child playing in one of those hamster balls on a swimming pool.

And I acknowledge, just occasionally I must get wet and then merely dry myself off.

 

The Disability Diaries : Admitting Defeat?

They say that asking for help is the hardest thing to do.  Is it?  I don't think so, in respect of disability I sometimes feel that actually getting the help is sticking point.  It appears, that time after time, you can ask for help but unless you have the staying power of an ultra-marathon runner, the skin thickness of a rhinoceros and the forcefulness of a stealth bomber, you are screwed.

 

We are a family that has always tried to cope 'in house'.  We have asked for nothing in respect of respite in the 10 years that our son has needed our constant care due to his severity of his physical disabilities courtesy of his condition of Cerebral Palsy.

 

Our mind-set has always been, he is our son and to care for him is our responsibility.  As a mother it is hard to believe that anyone other than those closet to him could ever care for him with enough respect and empathy and thus it has been almost impossible to let go.  However, we had to let him start school.  And with this came the realisation that there are people out there who can care for him that he enjoys the company of as well.  And by being so over-zealous with the apron strings, maybe we are letting him miss out on other things.  Others company.  Social aspects.  Broadening his own ability to trust.

 

Understanding this is one thing.  Actually loosening those apron strings, well that is quite another.  But you know you have to do it.  You have to do it with all children eventually, but when your child doesn't quite have the capacity to understand if someone is being mean, or mistreating them and you are not sure if they would be able to tell you it is much harder. 

 

It also forces you to think about the thing that you never want to think about.  What if you wasn't here.  So more often than not, you retreat, back to how you were keeping all care 'in-house'.  With just those that you trust implicitly.

 

But what happens when your son becomes your height and body weight.  When he slips down his specialist bed and you can't get him back up, or if you try you risk damaging your back, neck, shoulders?  

 

Injury.  A carer's biggest fear for themselves.  Not for the fact of the pain or discomfort, but what it will stop you being able to do.  Caring for your child.  You need to be fit and healthy for as long as possible so that at the very least you can still be the ears and eyes for your child.  So sometimes there comes a point where it isn't your choice anymore.  You have to ask for help.

 

But when you make that call to whichever service you think you need, you are just another voice on the end of the phone, asking for help from a system that can't really afford to help everyone.  You are starting at the beginning of a very long, bureaucratic road that is a bit like a game of snakes and ladders.  Get the right person on the phone and you can leap frog to the next level.  The wrong one and down you go, back to the start.

 

We once asked for help in respect of developing J1's social skills.  For him to understand that you can go and have fun like bowling, or to a club like scouts with a friend rather than an immediate family member, to try and broaden his horizons.  It was a big step, deciding to ask for that help.  To cope with the idea that someone else would be his carer while he was out in the big wide world - even just for an hour or two.  But, I acknowledged, it would be good for him.  It took nearly two years to get refused.  Because - we were coping as a family.  They made murmurs about standard 'send him away' respite.  But that was not what we were asking for.  We were asking for much less.  But never mind that.

 

This time I asked if we could look at getting some help overnight.  J1 requires someone to be in the room with him at all times.  Therefore either myself or my husband has to sleep in the room with him.  He is with us full time now, my parents can no longer offer to look after him for nights in the week, and although we do it without thinking, will this have a detrimental effect on our relationship long term?  People repeatedly tell me that you can have an overnight carer come into the home specifically to sit with a child overnight.  They normally say this with an amazed tone that we do not already have this in place.  Like it is our fault.  But I ask them -  CAN YOU?  Really? 

 

We do not seem to be able to make this clear to anyone I have spoken on the phone.  When, of course, you eventually work out that you are speaking to the right department.  This time, I was directed to a booklet of available help - guess what that booklet offered - help a few hours a week to help with social activities such as bowling or scouts.  

 

Frustrated much.  I think so.

 

So, another week has passed.  I have done what they asked me to do.  Look at a booklet that whoever was on the phone should have known would not be able to offer a service that I need for my son.  Another week gone. 

 

Why am I starting to worry about this now?  I was never a worrier because as far as I was concerned I would always be the one to look after my child.  Ah the innocence of my twenties.  That wonderful age where you do not believe you will ever really feel older.  But as I rapidly approach my mid-30's and I can feel that back twinge or that shoulder blade pull, and I do realise that my parents are now pensioners and J1 is a big lad, the realisation can no longer be avoided.

 

We need help.  It just grates me to admit it.  

The Disability Diaries : The efficient PA

Wikipedia says this about the role of 'Personal Assistant' :

 

"...A personal assistant or personal aide (PA) is someone who assists in daily business or personal tasks... a business man / women may have a personal assistant to help with time and daily management, scheduling of meetings, correspondence, and note taking..."

 

When you are a parent of a child with special needs and/or disabilities you become a PA for your child.  Along with the normal roles of being a mother or father - care giver, cook, cleaner, entertainment provider - all the usual things we do in order to keep our children happy, clean and fed - a giant part of your life must be given over to an administrative duty you didn't know was possible or needed for someone other than a 'business man - or women'.

 

Luckily I worked in the administrative/PA field for 15 years prior to becoming a stay at home mother so it comes as second nature, but even for me, who alluded to a career in that organised and methodical manner it can be arduous. 

 

J1 is now 10 years old.  I am used to dealing with professionals and 'The System'.  I am used to the long waits, the vague promises and being passed from pillar to post to find out a yes / no answer.  Don't get me wrong usually, in the end, you get a result but to get there you have to ring, email, chase, note take, leave messages, and ping pong from one service to another in a manner that even Miranda Priestley from The Devil Wears Prada would be proud of.

 

I have days where I can not face it.  The weekly list of 'people to contact' sits staring at me and the thought of leaving another answerphone message that doesn't say 'Ring me back before I end up on your doorstep with my disabled child and you can see for yourself why I need X,Y,Z' is too much.

 

Then I will catch a glance of a photograph.  Of my little boy trying to smile from his wheelchair.  Or watch his video that he insists I take of him on my phone singing Katy Perry's 'Roar' (or whatever his favourite song of the moment is) and I realise this is my job in life.  He needs my voice.  He needs my PA skills.  He needs his mum and dad to chase these people and sit in those meetings. 

 

Then I can get into full flight mode.  One number after another is dialled, I speak brightly and politely, because honestly, we NEED these professionals on our side and as frustrated as I can sometimes feel with them, I do understand that a lot of the time their hands are tied, money is sparse and they have huge case loads.

 

We have been re-located for four months now and I am still trying to get new professions on board.  This is the fourth or fifth week of calling round child development centres, school professionals, doctors, trying to establish who I should be working with to ensure my son is getting the help he needs to live the best life he can with the hardships he endures on a daily basis.

 

He needs equipment.  He needs to see specialists.  He needs to have his abstractly growing hips and spine monitored.  He wouldn't choose to need all of those things.  I wouldn't wish it on my worst enemy but that is the hand we were dealt and it is the one we live with every day.  Any family in the same position knows that is enough to cope with.  Having the added work load of having to be as organised and on the ball as the best paid PA in the world is just something we do.

 

Files and files of notes, appointment letters, referrals, delivery notes, invoices sit in my loft.  Put away as a record of our life.  A life touched by disability.  Sometimes when I venture up there I look at it and feel proud, that it is organised and efficient.  Other times I want to kick them all over the cold space and see them flutter into oblivion screaming WHY HIM?  A reminder that this has been the way of it for the last 10 years.  Thankfully I don't have to go into the loft very often.

 

Why have I written this?  Because I have just put the phone down from this weeks phone calls and I am sitting and waiting for all the promised calls back.  I am home alone and there was no one to rant or off load onto.

 

So instead I decided to write.

What Has Made Me Cheerful This Week?

 

With predictions of an 'Arctic Drift' all over the news channels I am grateful that I can write this blog post from the comfort of a warm home.  That we have wardrobes full of warm clothes and cupboards stocked with food and drink.  I pray that those that do not have such luxuries, can find shelter and be safe.  I take my hat off, to those that volunteer their time and effort to making that a possibility.

 

I find at this time of year I often think of how I can help homeless charities.  When the bitter winds blow and it becomes even more apparent that we are so very fortunate in many ways.  Then I feel a tug of all charities.  They are all so worthwhile and all trying to raise funds to help fantastic causes - that ultimately are all as important as each other.

 

Then I realise that you can only do so much, and in the end you generally opt for the ones that are close to your heart due to personal experience.  You become even more grateful to them because you can relate.

 

Most of my readers know that I aim to help disability charities, with particular interest in specific Cerebral Palsy ones, as my eldest son, J1, has CP himself.  I have a special interest in supporting Great Ormond Street Hospital, because not only was my late, beautiful cousin Lesley treated there, but many of J1's friends from school also receive help from them. 

 

What I revealed recently is that I also support gynaecological cancer charity GRACE after my own abnormal cells scare when I was younger.  It is this last one that will be the focus of my blog for the next week. 

 

It is Cervical Cancer Prevention Week (20 - 26 January) and I am cheerful because I have been able to pull together a great set of blog posts to raise awareness for this very preventable disease.

 

My one ask of anyone who regularly reads my blog, or who has just stumbled across it, is if you haven't been for a cervical screening recently, book it and go.  If you have, encourage your friends and family to do the same. 

 

Cervical Screening picked up my CIN3 abnormal cell changes just in time and I was able to have the treatment to remove them.  That five minute appointment saved me from cycles of chemotherapy, radiotherapy and operations.

 

That is a good enough reason to pick out to be cheerful any day of the week, not just this one.

 

For other 'Reasons to be Cheerful' posts (#R2BC) visit the hop over with Michelle at Mummy from the Heart.  Find inspiration to pick out something to smile about in this very cold winter month!

The Disability Diaries (The Life of J1) : Nine

Nine years ago today I was a new Mother of a day.  Eight weeks earlier than planned.  My baby boy was in SCBU High Dependency, covered in tubes, wires and face masks.  Rather than being in the peaceful surroundings of our warm and loving home, he was surrounded by loud, bleeping machines and nurses scurrying back and forth.  A wide eyed blond women sat staring at him, with a shocked expression, for 14 hours a day.  That women was me.  His mum.

I have written, numerous times about J1's birth, the fact that he was premature and the sad day we discovered he had suffered brain damage during the last hour of being in my womb and had been left with the condition Cerebral Palsy.  I have noted on many posts how severely physically disabled the Cerebral Palsy has left him and how we all face challenges on a day to day basis that we never knew were possible before J1 came into our world.

But in this post I want to talk about J1 making it to the ninth year of his life.  How I have realised over the last couple of years in particular, as we have sadly said our goodbyes to some children who J1 started school with, who have been taken as Angels and watched others fight for their lives and beat the odds, how lucky we are to have our little boy here to celebrate. 

I do not like to dwell on the fact that although J1 has a condition rather than a degenerative disease that will progressively get worse, there are factors within that condition that could threaten his life.  The fact that he suffered with Epilepsy in his younger years.  That he can have reflux in his sleep that could result in him choking to death if we were not close enough to get to him to move him.  That due to him not moving around his bowels to not get the movement needed to clear them easily, which if ever was left to take hold could cause all sorts of problems.  That because he does not walk his bones start to develop in the wrong way, which need operations to rectify.  Big operations, that come with all sorts of risks. 

These have to all be pushed to the back of my mind to get through the day, otherwise I would be a wreck sobbing on the floor.  However, every now and again I think it is important to take stock of these things and realise that despite all of those issues, he is a happy, joyful, cheeky and on a day to day basis healthy little boy.  That he trumps all of these negative possibilities with quite a gusty 'Ave That!' without even knowing it.

It is a joy to see my, once scrawny baby, who's legs were layered in rolls of skin because he didn't have any fat - eat his breakfast, lunch and dinner better than most other nine year olds we know.  To hear him sing along with the TV, even if we have seen the same programme a million times.  To watch him now interact with other, able bodied children his age, whereas once he would fear them.  To even see him be naughty and cheeky on occasion.

So in celebration of your ninth birthday J1, we thank you for being wonderful and appreciate everything you are.

Dreaming of Running

Channel 4, the official broadcasters of the 2012 Paraolympic Games, are running an advert at the moment.  It asks three gentleman, all in wheelchairs what they dream about.  One says he always walks again in his dream.  I think the other says he never dreams of walking.  The third laughs and says he doesn't know what they are dreaming about but in his dream he is just surrounded by wonderful women and doesn't take any notice if he can walk or not.

This really made me smile.  Then it made me think.  I have been doing that a lot lately.  I have been in that sort of philosophical mood, which doesn't always make me seem very happy.  But it isn't that I am not happy.  It just means that I am thinking.  About everything.  About nothing.  About stuff.  Sometimes my mind just needs to do that.  Maybe that is the writer in me.

It made me wonder about what J1 dreams about.  I can ask J2 and he always answers the same thing - 'Lion ROOOOOAAAARRRRRR'.  If that is true it may account for his truly erratic sleep behaviour!  But whenever I ask J1 he pauses, says 'Errrrrrrrr', pauses again and then sets to his default question -'Where is Daddy's car?'  This means you are not going to get an answer to your question.

So I am left wondering.  I am left wondering if he dreams of walking and running.  Does he dream of running around the playground, or competing able bodied in sports day?  Does he bounce on the trampoline until he feels sick and sweaty?  Does he run along the sea front running up and down the steps to the beach until we tell him not to do it anymore?  Does he run up the steps to the cafe to buy his ice-cream? 

I have a recurring dream.  Not everyday but always the same.  J1 walks into my bedroom and asks if he can wear his football shirt for school.  As wonderful as that is, when I wake up I get the crashing reality of life.  And that is painful.  Like when people say after they have lost someone, for that first few seconds of the day when you wake up, everything is perfect.  Then your memory comes to life and reminds you of days and events past. 

No matter how many years fly by, and how much I come to terms with / adapt to life as we now know it, the actual reality of knowing my son has brain damage is still a bastard.  It makes my heart ache with the longing to be able to change it.  It must be the biggest frustration in life that you will ever encounter - someone you love suffering with something, be it a condition or illness, and no matter what you do to help, aid, alleviate you know that you can't change it or stop it.

Maybe that explains my overwhelming need to keep in control of all other aspects of my life and my complete annoyance when I feel that is not the case.  My developing attitude that you must absolutely do what you want to do, if it is something that you have any control over being able to achieve.  Some people call that positive thinking.  I call it trying to make up for what I can't change or control.  A defiance that fate won't fox me into thinking I 'can't' control what happens.

Can someone that has never walked a single step dream what it is like to do so?  I like to think so - after all I dream of flying and I certainly can't do that. 

So, run little boy.  Run and laugh.

Published in SEN Magazine

The article I wrote for SEN Magazine was published this month.  It was thrilling to see my name in print!

If you would like to read my article, the magazine just released it online.   It can be viewed here (even though they say 'daughters' diagnosis and it should be son in the link - it is correct in the magazine and online article) :

https://www.senmagazine.co.uk/articles/1020-a-mother-tells-how-she-received-her-daughter-s-cp-diagnosis-from-a-most-usual-source.html

Special Saturday : Special Needs in my Life

Special Saturday is a great hashtag. It encourages everyone with whom Special Needs features in their lives, to write about it, status check it, tweet about it and link up in order to try and raise awareness of living with Special Needs. As you know I am always interested in any ways and means of raising awareness for this very reason (hence why I started The Disability Diaries) so I will be joining in this fantastic movement.


This week the wonderful Special Saturday prompt was to start your thoughts with

'Sharing my life with a person with Special Needs has...'

These are my thoughts:

Sharing my life with a person with Special Needs has rocked my world.  In a multitude of ways.

Firstly it rocked my world by oblitarating life as I knew it.  Kind of in the way that Superman hurls his enemies into space to float around in a timeless, impossible void.   I couldn't grasp the concept that my baby had suffered brain damage.  But there it was.  Quite literally in black and white on the scan.  A mark the size and shape of a thumb print on the left hand side of the brain.

Then my world was rocked back to shape by seeing the amazing miracles and achievements that my little boy was making everyday.  Will he walk?  No.  Will he sit?  No.  But he can tuck away a three course meal with pleasure and enjoyment and that is sadly something so many of the other wonderful Special Needs children we know can not do.  I learnt to be thankful for all the things he could do rather than resent all the things he couldn't.

Sometimes my world gets rocked and crushes me down.  Like today.  Whilst having a stretch out on his bed, from which he can see into the garden he said to me 'I can hear my brother, what is he doing?'  To which I replied 'He is on the trampoline.'.  He sighed and said 'I can hear him laughing.  He is having fun and giggling.  I can't do that.'  C.R.U.S.H.E.D.

Then there are days when my world rocks me into action.  I get up and think today I am going to get somewhere with XYZ equipment issue / person to chase / quote to get / charity to approach / school meeting.  I call and pester.  I email and leave messages.  I write letters and research things, until I feel I have made some small step forward. No matter how small it is.

There are also the days to recount when I have met some of the most wonderful people ever.  People who I really do not think I would have met had it not been for my son with Special Needs being in our life.  They are warm, loving, enthusiatic, friendly, open minded, strong and inspiring.  They are the teachers, teaching assistants, volunteers, helpers, carers, who help to look after my son when I am not there.  They are a special breed of human.  A wonderful one.  Their kindness rocks my world.

Sharing my life with someone with Special Needs has, I think made me a better person.  I used to be scared of and ignorant to disability.  I had never had any experiences with anyone who had disabilities or serious illness.  Now I understand that you smile and say hello and chat to that person in a wheelchair, or using crutches and the person standing by their side supporting them.  You chat to them as you would absolutely anyone else.  You don't look past them and make them invisible.  You ask about their disability and take an interest in that person. 

My sons Special Needs are great and varied.  They have caused issues to arise that I never would have dreamt would be something we would deal with under the umbrella of Cerebral Palsy.  But on the other side of the coin, his Special Needs have made our family closer, united, stronger.  Typically I would say we are a family who would usually take a backseat.  Just go with the flow.  Take what is said as what is right. 

You can not take that type of stand for your child with Special Needs.  You have to be strong.  You have to question.  You have to argue for what you think is right for your child and not just take the word of a professional, because chances are they will have only spent mere minutes (sometimes seconds) reviewing your child.  You know every inch of them.  You have to get your child the voice they can not yell with.

Sometimes I think I do a wonderful job, as a Special Needs mum.  Sometimes I think I do not fight hard enough for him.  We do not have every piece of equipment he probably needs.  We do not have some of the luxury items he could have to help enhance his life.  Sometimes it is hard, to get through everyday and on top of that find all the energy needed to do that extra fighting.  Other days it isn't hard.  Other days it is wonderful and I realise that sharing my life with a person with Special Needs has opened my eyes.

The Disability Diaries (The Life of J1) : Dark Days - The Big Day : Marathon 2006

Final part in a series of 'Dark Days' posts for Disability Diaries Feature. 

View parts one, two, three.

Beating depression is a highly personal thing.  Unless your mind, your brain, your thoughts want to banish it there is nothing anyone else can do, or say to make any difference.  If you are lucky enough to dispatch it out into the great unknown, that does not mean that it is going to stay floating out in space leaving you in peace for the rest of your days. 

For me, having suffered with depression for a short period in my life - in reaction to discovering my baby boy had suffered brain damage, with the consequence being he is afflicted with the condition Cerebral Palsy - I feel relatively safe that I can keep depression at bay.  I think it would take something pretty huge and grandscale, like what happened to J1 to take me back to that stage.

But I am mindful.  I was obviously susceptible to a degree, otherwise I would have made it through that period without anti-depressants.  To that end I respect, more than ever, the power of the mind and the need to keep it healthy, as much as the need to stay physically fit in order to be able to care for J1.

I was helped out of my personal 'black hole' with the help of science, but also with the suggestion of some good old fashioned 'Health and Fitness'.  From this suggestion I fell in love with running for the first time and decided that I needed to face a challenge.  A real challenge that could try and give me some tiny, small insight into what sort of strength J1 would need to have on a day to day basis.

I applied for a Gold Bond place with a charity to run the London Marathon 2006 and was successful.  After months of training, that in my opinion now should have been much more dedicated, we found ourselves at that wonderful weekend in April.  The roads of London were closed off.  The Mall was adorned with Union Jack flags.  Hotels were booked up with crazy Marathon wannabes.

We decided to make a family weekend of it.  My parents booked us a family room at a hotel for three nights and on the Friday morning, packed like loaded donkeys we took J1 on his first train journey to London.  It was exciting from the start.  We had a packed weekend, starting with going to the Expo to register at the Excel centre. 

It was wonderful.  A world of running and adrenaline surrounded me as I went from one stall to another, ate pasta and picked up all of my equipment needed for The Big Day.  A chip for my shoe.  A running number.  A bag for all of my personal belongings with '2006 London Marathon' emblazoned on it. 

On Saturday we were invited to a Pasta Party with the charity.  It was a fantastic boost as I got to meet other runners and hear their own personal stories of what had brought them to this point.  J1 got an amazing reception and many attendees said meeting him reminded them even more it had been worth all the effort of training.  It was a beautiful afternoon so we took J1 for his first ever visit to Hyde Park and enjoyed the City of London.

Out of everything, the thing I was most worried about was making my way to the starting point for the Marathon.  I have zero sense of direction.  I needn't have worried.  As I left the hotel I found myself constantly surrounded by other running attired people and at that time of the morning on a Sunday very few others.  The tubes were opened freely for travel by runners as part of the Marathon and there was a wonderful, excited buzz on the journey. 

Once off of the tube there was a fair walk to the start.  It was a unique sight seeing all the different running vests bobbing along.  By some miracle, both colleagues who I knew were also running I bumped into on the walk and it was nice to see a familiar face.  It helped take some of the pre-start anxiety away. 

I decided to be sensible and use the bathrooms before I joined the masses to get through the start gate.  That is quite a feat in itself.  There are plenty of toilets, but the queues for them are massive.  When I see the overhead shot on the TV now it always makes me smile.  Again, everyone just found it an opportunity to chat to others.  By the time I got through that queue the bulk of people had made their way through the start, so I didn't have to wait long before the big starting arch was in my vision.

With a lurge in my stomach, I checked I had everything where I needed it.  Felt that the chip on my trainer was secure for the millionth time.  Started, stopped and cleared my own stop watch and gamely set off on my Marathon Quest 2006.

It was still super busy at the start so I couldn't get running until about a mile in, and the excitement of it all; the crowds rows and rows deep full of cheer and support; the television cameras; the bunting and advertising meant I was at Cutty Sark before I realised it.  The next marker was Tower Bridge.  Half way.  They register your time here on your chip so all I could hear was 'beep, beep, beep, beep' of the runners times being captured, a memory stored forever.  My next marker was the Charity Cheering point at mile 18.  I was starting to feel it by the time I reached this point and was glad to see my family and J1, wearing his 'Run Mummy Run' T.Shirt. 

I took the opportunity to change my shirt and pick up extra sweets here.  It had rained non stop from the start and I was saturated and chilly.  I don't know if the stop was the trigger to hitting my wall, but at mile 19 I walloped into it with force.  The next four miles were bleak.  It is a pretty dull part of the race with scarce crowd support (it might have been due to the torrential rain which had by now set in of course). I was back to be absolutely soaked to the skin. I was sick of my sweets and Kendal Mint cake.  I had had enough and wanted to give up.  In the darkness of one of the tunnels I stopped.  I wanted to sit down and never run another step again.  I wanted to get a lift to the end. 

It was here I realised the importance of having a strong mind when doing a distance like the Marathon.  I had ignored this element of it and now I was suffering.  I had to go back to my key thoughts of 'I have the ability to do this run or walk, my child does not.' 

I plopped a tear as I realised that I had no clue where I was.  No phone signal to get some moral support and the only thing I could do was carry on.  After this low the rain eased up a little.  Then I saw it, the magical sign for 23 miles.  My final marker before the end.  I had trained my mind to repeat the following mantra on long runs - 'Only three short miles to go.'  As I crept out onto Embankment the support from the crowd lifted again to the heights it had been at the start.  I decided to start jogging again.

Three miles, at 23 miles is not short.  But as the two mile marker came into view I couldn't help feeling a buzz.  I was looking forward to running up the Mall to the Marathon music and to meeting my family at the end.  Just as I was coming into the Mall I heard my name being screamed.  As I looked I saw my family had managed to get to the front. They had lifted J1 out of the warmth and dry of his buggy and was waving his arms around.  He was in hysterics  and loving it and this pushed me to sprint the final 'point two' miles. 

Going over the finish line was immense.  I donned my medal and spotted a photographer and thought 'I have to have this picture'.  Lovely volunteers were wrapping me in foil and giving me drinks and asking how I felt at completing the Marathon?  I didn't know.  I felt exhausted and elated but it hadn't sunk in that I had actually completed that challenge I set myself the October before. 

It didn't sink in for a while either.  Everyone else who had supported me were more excited than I was.  It felt great to get my photos from the race arrive, and to see my name in the list of finishers in the newspaper.  My work did a follow up article about how I did.  Nowadays it is something I look back and think wow, what an amazing experience - how did I do that?

After the Marathon I came off of the anti-depressants.  I went back to my proper work hours and our life had truly started to have routine, that included all the world of disability and we were coping.  As I say, the sadness of it doesn't go away completely.  But I had made my way through the grieving process and had finally got to acceptance.  That had taken longer than 26.2miles and had been far tougher than the Marathon.

 

The Disability Diaries (The Life of J1) : Dark Days - The Beginning of a Journey

Part two in a series of 'Dark Days' posts in the 'Disability Diaries' Feature.

I have had friends, who have been struggling with how they feel, ask me how the anti-depressants actually helped me.  The only way I can describe how they helped me on the road to recovery is to explain; I was able to deal with more.  Rather than the smallest thing seeming like a big deal, or a mountain to climb, they became just what they were again; a small thing. 

This in turn allowed my mind to start dealing with the other issues that it had to process.  Over the course of 15 months the days spent crying became less frequent, and the old 'fighting' spirit started to return, slowly.  It was not an overnight cure, the lack of sleep did not assist matters.  However, days where we had negative news on J1's diagnosis - which could have knocked me out K-O style - instead meant I cried, had a bad day and was able to move on.

In short, I started to learn to cope.

My doctor had not just prescribed anti-depressants to try and combat my dark days, he also suggested that I needed a healthier diet and some form of exercise as a 'natural' remedy to help lift me up.  The diet change was relatively simple.  Pre-baby I had always maintained a reasonable diet (my weight does not automatically stay down).  Also at one point I had spent a long period being an avid gym attendee.

Although I had good intentions with the exercise I struggled to find the motivation to do something.  The only real 'exercise' I enjoyed was going to the gym and at the time I was not in a financial position to join one.  Work had allowed me to reduce my hours, but of course with that came a salary reduction.  As I worked within the Students' Union at the University I was surrounded by a lot of sport-friendly/financially restrained people.  One person suggested that I might like to take up running.  It was free, would give me a good dose of happy hormones and some fresh air.  They even offered to work out a training plan for me if I so desired!  I nearly fell off of my chair laughing.  After thanking them for the offer, I explained that I faked a sick note for every 'cross country' session at school and had never even run on the treadmill at the gym.  Running was not a sport for me.

Although I was starting to feel better I still did not feel strong enough to take up offers of social occasions with friends.  I wasn't ready to run the risk of being required to openly discuss J1's condition, or even worse have to deal with their sympathy.  Additionally I found, after an 'attempt' at trying to tell certain people, they got very upset.  I felt they were expecting me to be strong enough to help them deal with their grief.  I didn't have that sort of strength so went back to my withdrawn method.  At work, people were appropriately avoiding asking anything too personal.  They stuck to 'How's J1 doing, ok?' allowing me to answer with a simple 'Yes, thank you for asking' - which was about as much as I could cope with.  I was thankful for the polite and reserved trait of the English.  

It was on another Saturday evening at home, researching a charity website, that I came across the 'How You Can Help?' section.  The site listed different 'Adventures' that you could sign up to, such as; Walking the Great Wall of China; Trek Kilimanjaro; Cycle to Paris.  One caught my eye in particular 'Trek the Inca Trail - Peru'.  It looked just, stunning.

I printed off the details and slept on the idea.  When I got up on Sunday the thought of doing something to raise money for charity, charities that were giving us help and support, invigorated me.  I felt a bounce in my step that I had wondered would ever return.  I had never been very adventurous in choosing holiday destinations, and to be honest it did scare me somewhat.  I decided to call a friend who was very well travelled to glean their opinion on the choice of adventure.

I felt nervous approaching someone about something that I wanted to do.  I was used to just doing exactly what I chose to.  However, I quickly realised that if I was going to do something, as big as what I was setting my sights on, then I was going to need support.  I made the call, and my excitement must have been infectious because two hours later I received a message saying - 'Not only do I think it will be good for you, I am going to do it with you!'.

I was even more worried about suggesting the idea to my parents.  I was concerned that they would think it was a step too far, considering I had only just started to cope with day to day life.  I was not going to be able to do this without their full consent however.  I was going to need lots of babysitting agreement so that I could get fit; go away for practise treks; organise the fund-raising side of things and of course go on the trek itself.

I did approach them however.  Although I could see uncertainty with a touch of 'We will say yes but I can't see her going through with it' in their eyes, to say 'yes' I think they must have see a twinkle in mine that had been missing for sometime.  My mum suggested before I parted with any money registering, I should take a month or two working on getting fit to see if I could - in reality - fit all the training in that would be required.

I agreed.  I had read that I would cope better with the altitude issues that would present themselves, if I had a good lung capacity.  At the time I could have taken a decent wager that it was currently pretty poor.  I looked up what would be the best way to improve it and unsurprisingly the suggestion was; Running.  It was time to go back cap in hand to the very kind person that had offered to help me with this very subject.

Little did I know that running was about to become a very real and very important part of my life.  How taking on more would in fact help me cope better and how much it would improve my state of mind.

The Disability Diaries (The Life of J1) : Dark Days - The Discovery

The first post in a series of 'Dark Days' for the 'Disability Diaries' Feature

J1 was discharged from hospital and the Special Care Unit, at just over three weeks old.  This was such a relief, it was all positive steps in the right direction.  I had been lucky in one respect, because we had been sent out to a hospital quite a distance from our home, I was allowed to stay on the post-natal ward for two weeks so I could be with J1 within minutes.  Once we were transferred back to our local hospital, I had to commute daily which was very stressful. 

All the time I was not sitting by the incubator, which was only when I was sleeping, showering, eating or travelling, I was like a cat on hot coals, pining to be there.  I was still in a great deal of discomfort from my cesarean and although people kept telling me that I also needed to rest, I would be up at 6.00am so that I could get to the hospital to see my little miracle.  The 20 minute journey to the hospital which pre-J1 seemed like a short commute, seemed to take a life time.  Every bit of traffic seemed like an obstacle personally placed to stop me getting to my newborn.  Leaving at night was complete torture. 

However, when we were finally released the whole family breathed a sigh of relief.  We could now start our life as a 'normal' mother and baby.  A few days after he was home we had the standard midwife check up.  J1 was doing well, I however had broken out in a rather painful rash around my midriff.  After taking one look at it she declared "Oh dear, it's Shingles."

The Midwife suggested that it was probably a physical reaction to the shock of what had gone on over the last month.  I was quite surprised by this idea, as far as I was concerned I had just taken everything in my stride, and why had it happened now, when we were home and the pressure was off?  She said it was a common occurrence, that your brain can only take so much stress before it bubbles over and a physical reaction is required to 'release' it so to speak.

I probably should have been more aware of this when 'The Diagnosis' came.  I was doing exactly the same thing, thinking I was just taking everything in my stride.  The shocking fact that I had a son with a condition called Cerebral Palsy, all the extra hospital visits and appointments that came with this news, the usual stress of being a first time, single mother with a young baby and trying to work to provide a home and nice life. 

I ignored the initial signs that I was not dealing with everything that was being thrown into my path of life.  The signs such as, only going out to work, not taking friends calls or offers of a social hour out.  The days that I would wake up from my sleep sobbing, and then shed big, hot, ploppy tears for the next 12 hours of the day.  I stopped caring about my appearance, something I had always made a big effort with, particularly when it came to work.  I would go into my office each day, but my head wouldn't be there, I would just want to be at home, curled up with my baby on my sofa sleeping.

I also picked up every bug and virus on the radar.  I tried to keep going, until I developed tonsillitis so badly it gave me a temperature of over 100.  This knocked me off of my feet for days, and combined with feeling low to start with I slipped into a deep and dark pit.  My parents had to take J1 as we did not want him to contract it.  I laid on my sofa for three days, hardly moving, without the tv or radio on, not eating and wondered if I would ever get up. 

I laid and wondered if I had the strength to get up and keep going.  I questioned if I was capable of looking after this precious and special little boy.  If I could cope with what the world was going to place on our lap.  Buried deep in fear of the unknown and feeling far from well those are the worst three days I have ever lived through. 

Once the tonsillitis wore off and I had to return to work, I went as the shell of the person that I had been.  I remember walking in on the first day back, kind of dazed and straight to my bosses office.  They took one look at me and said "Your clothes don't match?  What's going on?".  When we discovered I couldn't really string a sentence together without tears, she immediately gave me some time off with the strict instructions to go and talk to my doctor.  She had been wanting to do this for a while but didn't want to upset me further by approaching me about it.

It was difficult in the doctors.  I tried to go in to say I was run down, but he could see it was more than that.  Much sobbing of 'I can't cope' (just saying those words was enlightening) he prescribed some anti-depressants, along with a healthy diet and some exercise.  As my Mother had come along with me, he was satisfied that J1 was being safely cared by me and my family.

Leaving the Doctors I was in two minds about the anti-depressants.  I really did not want to have to take them, there was such a stigma attached, would they cause unwanted side effects?  Did I really want to be taking them at 26 years old?  Would it not lead to a longer slippery slope?  My Mother made a two good points, I could research the ones I had been prescribed, until I was happy.  If I then made the decision that I was going to take them no one else even needed to know, I could just outwardly make the diet and exercise change.

Just by taking the steps to start to try and help myself, I immediately felt better.  I had regained a small amount of control.  I had been signed off of work so I had a couple of weeks to slowly start to make some lifestyle changes, and the important thing was that I wanted to.  I did research the anti-depressants and felt satisfied after further discussion with the doctor, that I would probably only need them for the short term.  The Doctor noted that I wasn't a seemingly 'depressed' person in general.  I had 'reactive depression' which given the circumstances, was not unsurprising.

Things did not change overnight, of course they didn't.  But never since have I had three days as dark as those I experienced at the beginning.  I started taking my tablets, I made more effort with my diet and I started to think about what forms of exercise I should undertake.  It was good to have something like diet and exercise to focus on.

My journey to recovery, acceptance and getting our happy life back had begun.

Disability Diaries (The Life of J1) : Trying to Live Life

After our diagnosis, life with 'Cerebral Palsy' began, but our 'Life with a Baby' didn't just stop.  In fact it was easy to pretend to those outside of our inner circle that our world hadn't changed.  I knew paperwork was plentiful, we were becoming familiar with alot of professionals who's titles ended in 'Ist' and play dates were fitted in around physiotherapy sessions, but although this condition had come into our lives, J1 was still only a one year old baby boy with the same everyday baby needs as any other.

I found myself in a strange state of limbo.  On the one hand I was trying my best to accept and understand J1's condition and come to the point where I could say 'My baby has Cerebral Palsy' to those that needed to know without collapsing in floods of tears (that took a few years just for the record, before then it would be hit and miss), and on the other I was trying to live life as regularly as possible so that we could enjoy J1 just being a baby boy, and not a baby boy with severe disabilities. 

As our diagnosis came at quite an early age for J1, for the most part while we were out and about no one would know anything was different for us.  He could go in a buggy (with some extra wadding down his sides) and a bit of adjusting every now and then, just fine.  When we went out to eat, rather than using a highchair, always so kindly offered, we would either hold him on our lap or feed him in his buggy and to be honest, I think people thought we were being over protective and no-one seemed to question that we were feeding him his bottle rather than him holding it himself, or solely feeding him rather than letting him try and do it himself.  I guess people thought that was our choice rather than our baby couldn't do it. 

The ignorance of strangers was bliss at that time, because if at any point the enormity of it all got to much, I could generally go out for a walk, or to the shops or for something to eat and for those short few hours, Cerebral Palsy didn't have to exist.  I was the same as all those other mums wandering around with their strollers, day bag filled with drinks, snacks, nappies and entertainment solutions.

This gave me a sort of 'grace' period I suppose.  I could deal with our diagnosis news at a slightly slower pace, and with those that were trying to understand it with me.  I knew I had to come to terms with the diagnosis, and I knew that I had to continue living life and not let it take over.  I had no idea how difficult those two things would be and how I shouldn't be afraid to accept help.  However, initially with my baby still a baby I tried to just get on, without letting it affect me at all.  I was a single mother who was working so an abundance of spare time wasn't something I particularly had.  

For those first few months I managed to close my eyes and continue on our hectic schedule whilst fooling everyone that I had just taken it in my stride.  However, babies grow and a shock like I had received doesn't just hit you and not leave an imprint.  This of course, all being on top of the fact, that I had been dealing with my baby arriving 8 weeks prematurely and spending a month in Special Care.  Stressful factors that also didn't get dealt with at the time.

In my haste to try and continue to live life and cope, I was ignoring the issue that I was not coping and my body was about to tell me to stop and deal with things.

Disability Diaries : The Day May Be Over But The Month Is Still To Come (Supporting Young Epilepsy)

**Part of a Series of Posts Supporting Young Epilepsy (www.youngepilepsy.org.uk)**

Recently I have been publishing articles in conjunction with the charity Young Epilepsy, to raise awareness that International Epilepsy Awareness day and Young Epilepsy's 'My Purple Pledge' campaign was taking place on Monday 26 March 2012. 

My own 'Purple Pledge' was to write blog posts and publish them for Young Epilepsy. I think it is wonderful that a condition as serious and (sadly) common as Epilepsy (but so often overlooked) had an awareness day and that I could be part of raising its profile.

However, all too often after the Awareness Day everyone moves on and it goes back to those loyal few to try and keep its profile up there in the spotlight.  And that is what I want to try and help to do, that is my continued 'Purple Pledge', because for those individuals and families managing their lives with the condition it doesn't disappear after Awareness Day.

I posted about our own personal experience with J1 and Epilepsy and noted that it is one of the things I fear most for J1, as I know that my parent friends with children with disabilities who also suffer with Epilepsy, find the Epilepsy part of the diagnosis one of the hardest parts to try and cope with. 

We are lucky at the moment as the activity in J1 appears to have ceased, but I am constantly on the look out for any sign of it emerging, and if it did / does I would need the help and support of charities such as Young Epilepsy.

Although the 'Awarenss Day' and the 'My Purple Pledge' campaign has had it's day for this year, I appeal to everyone to continue to support those for whom Epilepsy touches.  Epilepsy Awareness Month takes place throughout May and it aims to do just what it says; Raise Awareness. 

Raising money for these charities is one way of helping and lots of fundraising ideas are available to look at on the website www.youngepilepsy.org.uk but moreover, if more people just understood the condition and it's implications it would make a world of difference to those individuals and families to whom it is an intricate part of everyday life.

The Disability Diaries (The Life of J1) : Something I Am Thankful For (Supporting Young Epilepsy)

**Part of a Series of Posts Supporting Young Epilepsy (www.youngepilepsy.org.uk)**

**Will You Take The Purple Pledge on 26 March 2012?**

From when we brought J1 home from the Special Care Baby Unit, at just a month old (weeks before he should have even been born) he used to 'jump'.  At first we assumed that this was the normal reflexes of a newborn, particularly as my little newborn should have still been in my tummy.

This 'jumping' continued as J1 grew, but like everything we just assumed it was all normal and part and parcel of a baby.  As he got bigger, they got more frequent and for months I just always put it down to J1 being 'spooked', and reacting.

However, the 'jumps' started to become so frequent, they made me start to take notice.  What I noticed was that J1 could be as calm as anything and have a series of 'jumps' and this was happening many many times throughout the day.  This was obviously just one of things that I had started to notice that was not quite right, but it didn't occur to me either that it might be epilepsy.

One of the very first appointments we had to attend was for an Electroencephalogram (EEG).  As J1 sat on my lap and ate his lunch, looking a little like Medusa with all the patches attached to his little skull measuring his brain activity, the enormity of the situation still didn't occur to me.  It wasn't until the 'Accidental' diagnosis letter appeared that I realised, part of the diagnosis was 'Myoclonic Jerks' (possible epilepsy).

This worried me hugely.  I sort of understood epilepsy and I knew that I did not want my child to have that along with everything else he was dealing with.  However, after the EEG, it was like one small miracle happened.  The 'jumping' stopped.  And from the age of about 18 months to 3 we didn't see any activity that would indicate any form of Epilepsy.

Then something different started happening.  J1 started having episodes where he would go trance like and we couldn't snap him out of it.  Back to the Doctors we went and they suggested he was now having 'Absences'.  Again I was unfamiliar, as far as I knew Epilepsy meant uncontrollable fitting, I had to get into research mode and find out what I could.

J1 demonstrated these 'Absences' from the ages of 3 - 5, but again, thank the stars, they seem to have stopped occurring and I pray and pray that this continues.  So many of J1's school friends suffer with this terrible condition, and on speaking with many of the parents, it is this part of their disability that they struggle of cope with the most. 

Charities like Young Epilepsy provide essential support to parents like me, and are working hard to raise awareness of just how much Epilepsy is affecting young people today.   I will be producing a series of posts on this blog supporting Young Epilepsy and their campaign 'My Purple Pledge' which co-incides with the international 'Purple' day to mark Epilepsy Awareness on Monday 26 March 2012.

If you want to make a Purple Pledge please visit the Young Epilepsy website to see how you can help to make a difference.  Please support those who do deal with living with Epilepsy.  I am currently classing myself as one of the lucky parents who's child is not suffering with this condition, but I certainly live under the cloud of 'uncertainty' and pray that it doesn't rain down on J1 or my family again.